Cystic Fibrosis Testing

Cystic Fibrosis

Nemours’ cystic fbrosis (CF) teams teach children and their families about CF and how to manage the condition on a daily basis. Our CF programs are nationally accredited as CF Care Centers by the Cystic Fibrosis Foundation. Membership in this network helps us to ensure that children living with cystic fibrosis get the expert treatment they need to live longer, healthier lives.

Learn More About Cystic Fibrosis

Cystic fibrosis is an inherited disease that affects the lungs and digestive system. It makes kids who have it more vulnerable to repeated lung infections. This is because it causes the lungs to produce thick, sticky mucus that clogs the airways. The intestines are also affected in a way that interferes with the body’s ability to digest and absorb food.

Our team of health care providers works together to support your child and family, educating you about cystic fibrosis treatment and how to manage the condition on a daily basis. We focus on meeting the needs of our patients from birth to age 18.

Nemours offers:

newborn screening

diagnostic testing, the gold standard of which is a sweat test performed in one of our state-of-the-art laboratories

It is likely that at some point you will need some type of forms completed such as school health forms or FMLA papers.

Please allow us 5-7 business days to complete. We will be happy to mail the completed forms to you or you may pick them up at the clinic.

Important Information About Phone Calls

Your phone calls and requests are very important to us. If your child is sick, try to call as early in the day as possible so we can consult with a physician and if your child needs to be seen. Please do not send urgent care messages via MyNemours.

When to call:

If your child is sick with cold symptoms or increased cough, nasal congestion or drainage, call the CF/Pulmonary Center.

You should also call the CF/Pulmonary Center if your child is having stomach aches or cramps, constipation or trouble passing stools.

Things to know when you call:

symptoms and how long they have been going on

what has worked in the past

any antibiotics at home

pharmacy number or address

If Your Child Needs Prescription Refills

Before each clinic visit, please check to see which medications you might need refilled and ask for refills at your visit. Please note that we do not fax in prescriptions to mail-order pharmacies but will be happy to give you prescriptions for a 90 day supply of medications. We can also send your prescriptions via the computer to your preferred pharmacy.

We don’t want you to run out of medications, so if you forgot to get a new prescription at your appointment and need a medication refill, call the office early. Routine prescriptions are called in to the pharmacy within 48 hrs.

Our Cystic Fibrosis program at Nemours Children’s Specialty Care, Jacksonville, is nationally accredited as Cystic Fibrosis Care Center by the Cystic Fibrosis Foundation. Membership in this network helps us to ensure that children living with CF get the expert care they need to live longer, healthier lives.

It also means our caregivers participate in the Cystic Fibrosis Foundation Registry, which contains a wealth of information on topics like diet and nutrition, which are essential in managing CF. The CF Registry also serves as a database for researchers studying new drugs and therapies for children with cystic fibrosis.

Our CF team cares for children from birth to age 18 throughout northeast Florida and southeast Georgia. We offer newborn screening; diagnostic testing (the gold standard of which is a sweat test performed onsite in one of our state-of-the-art laboratories.)

Helping Children with CF Live Healthier Lives

Our team of health care providers works together to support your child and your family, teaching you about CF and how to manage the condition on a daily basis. We focus on meeting your child’s individual needs, offering; treatment for newly diagnosed infants and children; long-term care plans; and assistance with transitioning our teenage patients to adult CF programs.

We offer comprehensive care in a family-oriented and convenient environment, with all care provided at one location. An integrated electronic medical record allows all of your child’s doctors and caregivers to communicate in "real time" and keeps all team members up to date on your child’s care and progress.

Taking a Team Approach to Cystic Fibrosis Care

Our CF team includes lung and respiratory care doctors (Pulmonologists), a pediatric nurse practitioner and cystic fibrosis clinical nurse specialists, as well as other Nemours sub-specialists who have expertise in CF care.

Important partners in caring for your child also include:

Registered dietitian: Nutrition is so important in keeping your child’s lungs strong. Our dietitian watches your child’s growth and weight gain over time. It is her job to work with you to make sure that your child eats the right amount of calories each day. She can give you helpful tips to encourage your child to develop healthy eating habits, as well as provide you with great recipes and tips to use at the grocery store.

Respiratory therapist: This is the person who will do your child’s pulmonary function testing and serves as a great resource to help you learn about airway clearance, how to give your child respiratory therapy treatments child at home and to answer your questions.

Social worker: Our social worker is available to provide you with a wide range of important services:

advocacy for children and families

access to hospital and community resources

case coordination and discharge planning

emotional support and counseling to children and their families

help with adjusting to illness, hospitalization, and outpatient treatment

short-term therapeutic interventions for children, parents, and their families

crisis intervention, grief counseling and referral

Routine and Annual Visits for Children with Cystic Fibrosis

The Cystic Fibrosis Foundation has established guidelines for managing the medical care for Cystic Fibrosis (CF). This includes quarterly visits, a comprehensive annual visit and visits if your child is having any illness due to CF.

What to Expect at a Routine Follow-up Visit

Routine follow-up visits are scheduled about every 3 months. This visit is designed to see how your child is doing and to catch any potential problems early. At your child’s first visit, we will check his/her weight, height, determine their nutritional status, examine your child, collect a throat or sputum culture. When they are old enough (about 5-6 yrs old), we'll perform a breathing test (PFT’s). Besides seeing the practitioner, you might also see our dietitian, respiratory therapist, and/or a social worker. We ask that you bring a list of your child’s medications with you to the appointment so we can match what your child is taking with our record. We might also ask you to bring in the device you are using for chest physical therapy (CPT).

What Happens at an Annual Visit

Once a year, your child will have an annual visit which tends to be a bit longer. During the annual visit, we monitor every aspect of your child’s CF. During this visit, it is likely that blood work will be ordered so if your child is fearful of shots, ask for “EMLA cream.” (EMLA cream numbs the skin so the shots don’t hurt.)

Annual blood work can include:

Complete blood count (CBC) and prothrombin time (PT) to check for anemia, clotting dysfunction, and the body’s response to infection.

Vitamin levels to check for inadequate absorption of fat soluble vitamins that can lead to complications such as vision loss or poor bone health.

Other tests to expect:

Chest X-Ray: A chest x-ray is done every 2 years or when needed if your child is sick with increased cough or reduced lung function.

Providing Families with Educational and Emotional Support

Education is a key component in our goal to help children and families manage CF. We teach families what to do in emergencies, provide education and the latest information about the disease, and host support groups with speakers and topics ranging from insurance issues to community and school resources. Social workers are available to help individual families with issues like funding care, insurance coverage, and transitioning teenagers into adult CF programs.

We also take into account the emotional toll of living with CF. Children with CF often have periods where they cannot interact with other children because of the risk of developing infections ,so we’ve developed resources to help children and families cope with these feelings. We offer newsletters (link to newsletters) and our “Let’s Talk” parent support group. In addition, Nemours is developing an online chat service for CF patients.

Searching for Breakthroughs in CF Treatment and Research

Nemours Children’s Specialty Care, Jacksonville is a nationally certified CF research center. Nemours CF teams are also active participants in quality improvement projects and research. We’re involved in a number of studies looking at new drugs, and we also have a grant to examine how using our electronic medical record, NemoursOne, helps us to determine best practices and improve care.

We do all of this because we are committed to improving the quality of life for children with CF, so they can remain active and physically able to participate in the activities they enjoy, and achieve their best possible health.

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